question

[Guest guest]

Thanks for that Connie. I dont think my friend is using one but if I get a

chance I will speak to her about bringing up these options with her doctor.

Yes Im sure you are right about the allergies.

my whole family has lyme and we also have gluten intolerance.

It took my daughter quite a few years to get that around her head.. but she

has given up gluten for a few months now and her asthma has improved

dramatically.

there are so many layers to get through.

Hugs back

Dona

Connie Siese <Cslyme@...> wrote: yes, it

was a nebulizer.....much easier than an 8 hour ER wait. I think

allergies play a big part. I never smoked, but grew up in the 50's and

everyone was around smoke...........I have a minimal amount of emphysema

from it, but it doesn't bother me. i had to go have one of those big long

lung tests at the hospital......it helped my doctors tell me what to do.

hugs,

connie, michigan

>

> When you say breathing treatment machine do you mean a nebuliser that is

> used for asthma?

>

> Actually I have wondered whether there is an allergic component to the

> disease.

>

> Dona

>

>

>

> Connie Siese <Cslyme@...> wrote: >

> Hi Donna,

> I did breathing treatments as much as I could tolerate, I also had to

> get a handle on the yeast, that really fed my COPD. I did 3 different

> inhalers every day. Finally when I retired and got out of the school

> buildings things got a lot better. I only have a problem once in awhile.

> Only use inhaler when needed and rarely used my breathing treatment

> machine.

> I wouldn't have made it without using that. I used to come home on my 30

> minute lunch and do a 12 minute treatment and rush back to school cuz I

> couldn't breathe. Good Luck, hope this helps. My yeast is so much

> better.

> OH I also took allergy shots fo 3-4 years to help.

>

> hugs,

>

> connie, michigan

> > Can you please tell me what sort of treatment you are getting for the

> > COPD?

> > My friend says her doctor tells her nothing and just feeds her

> > chemotherapy.

> > I would be interested in finding out how you managed to improve your

> > situation.

> >

> > Thanks

> > Dona

> >

> > Connie Siese <Cslyme@...> wrote:

> > Hi Dona,

> > I have COPD too and Lyme. Now that I away from the schools I worked

> > in,

> > my copd is better, but I am also able to rest, etc more.

> >

> > connie, michigan

> >

> > >

> > > Hi

> > > Im wondering if anyone can help me with a question I have.

> > >

> > > A friend has chronic obstructive lung disease and there are so many

> > > other factors happening in her life that makes me wonder if she would

> > > benefit from being tested for lyme.

> > >

> > > does anyone know of any instances where a lyme sufferer has this

> > > condition?

> > >

> > > Dona

> > >

> > >

> > >

> > >

> > >

> > > The book, Confronting Lyme Disease: What Patient Stories Teach Us, is

> > > now

> > > available through Amazon and Booksurge Bookstores. Please visit the

> > > official website at http://www.confrontinglyme.com for more

> > > information.

> > >

> > >

[Guest guest]

I do not know if there would really be a problem if they didnt have the

hour off but I think it is too give the babies a break. Not sure if you

have the " stinky head " problem but I know when I take my son's band off

the helmet as well as his head STINKS! It has been pretty hot here

where I live so I am sure that is a contributing factor as well. I

think also the hour off allows time for hygiene for bathing your babies

as well as washing their heads.

Just my 2 cents!

Mom to CJ - 16 1/2 mo old

Doc Band 4/30

Tort - unresolved.

>

> you know how they say to have the babies to wear them for 23 hours

and

> then an hour off. What would happen if I did not give them that hour

> off? We have three weeks until the next neurosurgeon appoinment and

I

> would really like him to say my babies are done wear these helmets.

>

>

> Mom to Gwenith & Gilbert

> 12 months old

> P.A.P 1/06/07

> Graduated 06/07/07 but

> back in them again 06/28/07

>

[Guest guest]

I don't think that any thing really negative would happen, but I do think it is good to let the head breathe for a little while. I would think that even if you tried to keep it on for 24 hours that you would still end up having it off for about an hour total each day because you have to take it off to bathe your baby and then wait for your baby's hair to dry before you put it back on. You also have to take it off to clean it and that also requires time for drying. So even if you did not take it off for one consecutive hour, each little bit of time that you took it off during the day would probably add up to one hour anyway. Just my thought... , NY mom to Madison 17 months (9-12 months hanger band / doc band since 16 months)chellekay78 <chellekay78@...> wrote: you know how they say to have the babies to wear them for 23 hours and then an hour off. What would happen if I did not give them that hour off? We have three weeks until the next neurosurgeon appoinment and I would really like him to say my babies are done wear these helmets.Mom to Gwenith & Gilbert12 months old P.A.P 1/06/07Graduated 06/07/07 but back in them again 06/28/07

Luggage? GPS? Comic books?

Check out fitting gifts for grads at Search.

[Guest guest]

Dear ,

I noticed that Madison was originally in a Hanger helmet and is now

in a DOC band. I am guessing that your story is in the archives

somewhere, but would you mind sharing the reasons for needing 2

helmet/bands and why you decided to switch companies? Thank you!

> you know how they say to have the babies to wear them

for 23 hours and

> then an hour off. What would happen if I did not give them that

hour

> off? We have three weeks until the next neurosurgeon appoinment

and I

> would really like him to say my babies are done wear these helmets.

>

>

> Mom to Gwenith & Gilbert

> 12 months old

> P.A.P 1/06/07

> Graduated 06/07/07 but

> back in them again 06/28/07

>

>

>

>

>

>

>

> ---------------------------------

> Luggage? GPS? Comic books?

> Check out fitting gifts for grads at Search.

>

[Guest guest]

CT told me that you did not have to give them the hour off unless there were red marks. We often went days when we were so busy that we could only give her 15-20 minutes off while we cleaned the band..it just means they have more time for improvement. However as for trying to rush the process I don't know that that extra hour really will make a difference- but then who knows. Mom to Madison 11 months DOC 3/30/07-7/14/07 chellekay78 <chellekay78@...> wrote: you know how they say to have the babies to wear them for 23 hours and then an hour off. What would happen if I did not give them that hour off? We have three weeks until the next neurosurgeon appoinment and I would really like him to say my babies are done wear these helmets.Mom to Gwenith & Gilbert12 months old P.A.P 1/06/07Graduated 06/07/07 but back in them again 06/28/07

Park yourself in front of a world of choices in alternative vehicles.Visit the Auto Green Center.

[Guest guest]

I believer it is just to give you time to wash the helmet, let it dry

and wash the babies head. If you can get this done in less time then I

would say that is fine. I'm not sure that the hour will make a

difference either way, but you never know.

I hope that they will graduate at your next visit. I'm sure you miss

their little heads.

-christine

>

> you know how they say to have the babies to wear them for 23 hours and

> then an hour off. What would happen if I did not give them that hour

> off? We have three weeks until the next neurosurgeon appoinment and I

> would really like him to say my babies are done wear these helmets.

>

>

> Mom to Gwenith & Gilbert

> 12 months old

> P.A.P 1/06/07

> Graduated 06/07/07 but

> back in them again 06/28/07

>

[Guest guest]

We had days like where we were so busy that I'd quickly

bathe my son, clean the band, and then put it on as soon as it was

dry. I agree that I don't know that rushing the process will do

anything as it will still depend on growth spurts.

> you know how they say to have the babies to wear them

for 23 hours and

> then an hour off. What would happen if I did not give them that

hour

> off? We have three weeks until the next neurosurgeon appoinment

and I

> would really like him to say my babies are done wear these helmets.

>

>

> Mom to Gwenith & Gilbert

> 12 months old

> P.A.P 1/06/07

> Graduated 06/07/07 but

> back in them again 06/28/07

>

>

>

>

>

>

>

> ---------------------------------

> Park yourself in front of a world of choices in alternative

vehicles.

> Visit the Auto Green Center.

>

[Guest guest]

Hi - Well, like many others, I noticed Madison's odd head shape from very early on, but the ped kept telling us that is would round out. By eight months, I took matters in my own hands and went to see a ped. neurologist since our ped would not give us a referral. So by about 9 months, she was in her hanger helmet. She wore that helmet from about 9-12 months with minimal correction. The ortho's excuse was that she just wasn't having a growth spurt, but I thought it was very strange and throughout that entire time he never made any adjustments. The hanger helmet looked like it had plagio and was fitting tighter on the flat side and looser on the rounder side. I could not understand the logic, but the ortho kept saying that the fit was good. Needless to say, at 12 months I decided to stop treatment on my own. Her head shape wasn't perfect, but it was not noticeable to most people. At about 13 months, I decided to

try for a CT helmet, but the insurance I had at that time did not cover a CT helmet. A few months later my job switched insurance companies and the new company covered a CT band. So I used my original prescription in order to get the process rolling and got her CT helmet by 16 months. I wanted to see if any more correction could be achieved. She has had it for about one month and already we see some correction, which is great considering her age. That is basically our story. Let me know if you have other questions. , NYforelliej <forelliej@...> wrote: Dear ,I noticed that Madison was originally in a Hanger helmet and is now in a DOC band. I am guessing that your story is in the archives somewhere, but would you mind sharing the reasons for needing 2 helmet/bands and why you decided to switch companies? Thank you!> you know how they say to have the babies to wear them for 23 hours and > then an hour off. What would happen if I did not give them that hour > off? We have three weeks until the next neurosurgeon appoinment and I > would really like him to say my babies are done wear these helmets.> > > Mom to Gwenith & Gilbert> 12 months old > P.A.P 1/06/07>

Graduated 06/07/07 but > back in them again 06/28/07> > > > > > > > ---------------------------------> Luggage? GPS? Comic books? > Check out fitting gifts for grads at Search.>

Be a better Globetrotter. Get better travel answers from someone who knows. Answers - Check it out.

[Guest guest]

I think the hour is for bathing, cleaning, skin checks and skin down time. I'd be afraid of skin break down if left on for 48 hours straight.

Jen and Luli - 19 mo.

Left Tort - Right Plagio - Hanger Band Grad - CA

tallulah jayne

www.babiesonline.com/babies/j/jens5th/

question

you know how they say to have the babies to wear them for 23 hours and

then an hour off. What would happen if I did not give them that hour

off? We have three weeks until the next neurosurgeon appoinment and I

would really like him to say my babies are done wear these helmets.

Mom to Gwenith & Gilbert

12 months old

P.A.P 1/06/07

Graduated 06/07/07 but

back in them again 06/28/07

AOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com.

[Guest guest]

HELLO JOYCE,

MY NAME IS ANN. I TAKE JUST 3MG AT BEDTIME. I HAVE READ THAT TAKING 4MG MIGHT BE TO MUCH. EVERY BODY IS DIFFERENT.

I KNOW A MAN IN ALA. THAT HAS THE RELAPSE REMITTING, THE SAME AS I DO. HE TOOK 3MG AND STILL DOES. HE IS ABLE TO WALK AND DRIVE NOW, AFTER TAKING THE LDN A YEAR. HE SAID HE NOTICED THE IMPROVEMENT AFTER 3 MONTHS. I'VE ONLY BEEN TAKING 3MG FOR 3MONTHS. I CAN FEEL THE CHANGES IN ME, BALANCE IS BETTER, BLADDER CONTROL, WASHING DISHES, ROLLING OVER IN THE BED AND OTHER LITTLE THINGS.

DON'T GET IN A HURRY, IT WILL HAPPEN.

ANN************************************** Get a sneak peek of the all-new AOL at http://discover.aol.com/memed/aolcom30tour

[Guest guest]

>

> Because I am having a hard time this summer with the heat and

humidity and

> possibly some new progression, and because I haven't been able to

take more than

> 3.0 without having extreme stiffness and other discomfort, I tried

something

> new this week.

>

> I take my regular 3.0 at night but in the morning I take 1.5. It

seems to

> help with the spasticity. Has anyone else tried this--I would be

really

> interested to hear.

>

> Joyce

=========

You don't want to block endorphins twice in a 24 hour period. Dr.

Bihari and Dr. Zagon both warn about that.

Have you done things to improve overall health like removing dairy,

gluten and sugar from diet. done any candida yeast or liver detox

programs, added acupuncture or massage therapy? Have you been checked

for lyme by IGeneX Labs? Can you get exercise in a local pool like

YMCA or club? Have you tried Dr. Lawrence's supplement therapy that

is an Alterative for relapses(oxidative stress)?

[Guest guest]

Hi Joyce this is interesting please kepp us abreast of the results. I think

quite a few of us are experiencing increased stiffness.(me too) My only

concern is weather this would continue to block the endorphins? Barbara

>From: DollsEsq@...

>Reply-low dose naltrexone

>low dose naltrexone

>Subject: [low dose naltrexone] Question

>Date: Sun, 22 Jul 2007 15:00:33 EDT

>

>Because I am having a hard time this summer with the heat and humidity and

>possibly some new progression, and because I haven't been able to take more

>than

>3.0 without having extreme stiffness and other discomfort, I tried

>something

>new this week.

>

>I take my regular 3.0 at night but in the morning I take 1.5. It seems to

>help with the spasticity. Has anyone else tried this--I would be really

>interested to hear.

>

>Joyce

>

>

>

>************************************** Get a sneak peek of the all-new AOL

>at

>http://discover.aol.com/memed/aolcom30tour

_________________________________________________________________

http://imagine-windowslive.com/hotmail/?locale=en-us & ocid=TXT_TAGHM_migration_HM\

_mini_pcmag_0507

[Guest guest]

Where did Dr. Bihari say not to block endorphins twice in 24 hours? I would like to read that.

I have been on 3.0 for about 14 months now and have gotten a lot of benefits but I still feel that there is some slow progression. I have tested negative for Lyme at an Igenex lab and I do Feldenkrais.

I have actually felt pretty good taking 3.0 at night and 1.5 midmorning so I would like to see the warnings against it.

Thanks for your responses to my question.

Joyce Get a sneak peek of the all-new AOL.com.

[Guest guest]

>

> Where did Dr. Bihari say not to block endorphins twice in 24 hours?

I would

> like to read that.

>

> I have been on 3.0 for about 14 months now and have gotten a lot of

benefits

> but I still feel that there is some slow progression. I have tested

negative

> for Lyme at an Igenex lab and I do Feldenkrais.

>

> I have actually felt pretty good taking 3.0 at night and 1.5

midmorning so I

> would like to see the warnings against it.

>

> Thanks for your responses to my question.

> Joyce

The rationale for taking LDN only at night is that there

is one and only one time during the 24hr cycle that your

immune system recharges itself.

That occurs in the predawn hours of sleep, when the body

makes and releases fresh endogenous immune opioid hormones

(beta-endorphins and metenkephalins).

The body uses a feedback mechanism to determine when it

has released enough of those. What LDN blockade does is

prevent that feedback from occurring -- so the body does

not stop making and releasing opioids. " Extra " opioids

end up being produced and circulating through your body.

But those opioids have to be able to bind at cellular

binding sites in order to send immune signals. If the

blockade never stopped, none of the opioids in the body,

not the ordinarily occuring ones nor the " extra " ones,

would be able to induce immune function.

So timing the blockade to occur as closely as possible

during the predawn hours is the optimal approach, and

we want to leave the receptors unblocked at all other

times to let the opioids do their job.

Bihari built up a pretty extensive body of research and

experimentation going all the way back to the 1980s. He

has not in any contemporary comments or notes *ever*

suggested using LDN during waking hours.

What he has talked about is what happens when people

took naltrexone the way it was originally intended:

big doses that produced 24hr blockade. Bihari notes

that those people ended up being miserable and unwell.

Which is what one would expect. Having blockade

always activated means that the immune system can't

function. And there are a lot of other systems that

rely on body-manufactured opioids (like mood) which

also are interfered with by constant blockade.

If you think that daylight LDN works for you, go to

it. But I would register a gentle caution. Such usage

is not consistent with what is known about the med

both from theory and from experience.

--

[Guest guest]

> >

> > Where did Dr. Bihari say not to block endorphins twice in 24

hours?

> I would

> > like to read that.

> >

> > I have been on 3.0 for about 14 months now and have gotten a lot of

> benefits

> > but I still feel that there is some slow progression. I have

tested

> negative

> > for Lyme at an Igenex lab and I do Feldenkrais.

> >

> > I have actually felt pretty good taking 3.0 at night and 1.5

> midmorning so I

> > would like to see the warnings against it.

> >

> > Thanks for your responses to my question.

> > Joyce

>

> The rationale for taking LDN only at night is that there

> is one and only one time during the 24hr cycle that your

> immune system recharges itself.

>

> That occurs in the predawn hours of sleep, when the body

> makes and releases fresh endogenous immune opioid hormones

> (beta-endorphins and metenkephalins).

>

> The body uses a feedback mechanism to determine when it

> has released enough of those. What LDN blockade does is

> prevent that feedback from occurring -- so the body does

> not stop making and releasing opioids. " Extra " opioids

> end up being produced and circulating through your body.

>

> But those opioids have to be able to bind at cellular

> binding sites in order to send immune signals. If the

> blockade never stopped, none of the opioids in the body,

> not the ordinarily occuring ones nor the " extra " ones,

> would be able to induce immune function.

>

> So timing the blockade to occur as closely as possible

> during the predawn hours is the optimal approach, and

> we want to leave the receptors unblocked at all other

> times to let the opioids do their job.

>

> Bihari built up a pretty extensive body of research and

> experimentation going all the way back to the 1980s. He

> has not in any contemporary comments or notes *ever*

> suggested using LDN during waking hours.

>

> What he has talked about is what happens when people

> took naltrexone the way it was originally intended:

> big doses that produced 24hr blockade. Bihari notes

> that those people ended up being miserable and unwell.

>

> Which is what one would expect. Having blockade

> always activated means that the immune system can't

> function. And there are a lot of other systems that

> rely on body-manufactured opioids (like mood) which

> also are interfered with by constant blockade.

>

> If you think that daylight LDN works for you, go to

> it. But I would register a gentle caution. Such usage

> is not consistent with what is known about the med

> both from theory and from experience.

>

> --

>

============

Joyce,

This was discussed during a phone consultation between my mom and

Bihari.

I saw it written by Zagon in a few emails some got from him. I beleve

it could cause progression of disease, it's been a good long while

since I saw what was written. I think Art Hansen saw the same email I

did, Art do you recall the email by Zagon stating not to take LDN more

than once in a 24 hour period?

[Guest guest]

> Joyce,

>

> This was discussed during a phone consultation between my mom and

> Bihari.

>

> I saw it written by Zagon in a few emails some got from him. I

beleve

> it could cause progression of disease, it's been a good long while

> since I saw what was written. I think Art Hansen saw the same email

I

> did, Art do you recall the email by Zagon stating not to take LDN

more

> than once in a 24 hour period?

>

>

>

,

Yes, it was during an exchange where we were discussiong the merits of

taking LDN at night between the hours of 9PM-3AM or in the morning. Dr.

Zagon felt either way was okay as long as one didn't take LDN twice in

a 24 hour period. I'll try to locate his exact email.

Art

[Guest guest]

Thanks Art and everyone else who responded--I am back on once a day now. Seems too risky to stay with the twice. I'm so glad I asked )

JoyceGet a sneak peek of the all-new AOL.com.

[Guest guest]

If any doubts remain, definitely have it checked out by (or at least

consult with) a decent dermatologist.

        Posted by: " bk4529@... " bk4529@...

gardengranybabe   Date: Sun Aug 5, 2007 6:15 pm ((PDT))

I hope you don't think this is a silly question, I'm wondering does

cancer itch? I had a pimple type thing appear near where my bladder is

located, It came to a head and then scabbed over but it still itches.

I've never had anything like this in my life. Can anyone tell me if they

ever had anything like this?

Barbara

[Guest guest]

Moses Albert or Silverman both in fairfax are excellent

dermatologists!

robert-blau@... wrote:

If any doubts remain, definitely have it checked out by (or at least

consult with) a decent dermatologist.

        Posted by: " bk4529@... " bk4529@...

gardengranybabe   Date: Sun Aug 5, 2007 6:15 pm ((PDT))

I hope you don't think this is a silly question, I'm wondering does

cancer itch? I had a pimple type thing appear near where my bladder is

located, It came to a head and then scabbed over but it still itches.

I've never had anything like this in my life. Can anyone tell me if

they

ever had anything like this?

Barbara

[Guest guest]

" Moses Albert or Silverman both in Fairfax are excellent

dermatologists! "

IMHO, Moses Albert is not an excellent dermatologist. If you are in the

Northern Virginia area, I would go the Skin Center (or Skin Cancer Center -

sorry, busy moving today or I would look it up) in Sterling. The dermatologist

there only does skin checks and treatments for skin cancer. You don't have to

wait weeks to get in and they don't try to give you botox. I've had 14 basal

cells removed and currently have 10 or more. Moses Albert treated me like I was

making up my history (until he took a closer look) - after making me wait two

hours - after waiting six weeks to see him.

[Guest guest]

Since I don't have medical insurance I will see my family Dr. This place

still itches and I have heard and read that cancer does open or drain, it breaks

out in some areas. I have a recipe for the black salve that you put on it to

draw it out but I won't use this until I'm sure that this is what's going on.

I need to get started on the FOCC.

Barbara

[Guest guest]

Hi, Barbara.

A couple of things. My apologies if you took me seriously about the

prairie dogs. It was certainly a joke.

Secondly, if you have never used black salve, be VERY careful with it.

I thought about trying it, but finally found a company that makes it

who leveled with me and told me it is extraordinarily painful to use---

" excrutiating " was the word they actually used. They said I would need

prescription pain relief medication while using it.

I would certainly try the FOCC before seriously considering black salve.

Elliot

[Guest guest]

What is FOCC? I have googled it, and the results I get don't make sense in this

context.

Thanks,

ge

---- bk4529@... wrote:

Since I don't have medical insurance I will see my family Dr. This place

still itches and I have heard and read that cancer does open or drain, it breaks

out in some areas. I have a recipe for the black salve that you put on it to

draw it out but I won't use this until I'm sure that this is what's going on.

I need to get started on the FOCC.

Barbara

[Guest guest]

Greetings,

Actually I use black salve whenever one of my moles turns a funny color.

I do understand black salve can be very painful if you are trying to

dig a cancer out from deep inside the tissue, but to use on a cancer

that is right up on the skin does not even require an aspirin for pain.

It tingles a bit, itches like crazy when healing, but is not at all

painful.

So, like everything else, whether or not it is good to use depends on

what you are trying to do with the black salve. No black and white

rules, no it is always too painful.

I am not the only one that uses black salve to deal with melanoma on an

ongoing basis, and it works great. I have yet to take even an over the

counter pain killer because of using it.

Bright Blessings,

Kim

breathedeepnow wrote:

> Hi, Barbara.

>

> Secondly, if you have never used black salve, be VERY careful with it.

>

> I thought about trying it, but finally found a company that makes it

> who leveled with me and told me it is extraordinarily painful to use---

> " excrutiating " was the word they actually used. They said I would need

> prescription pain relief medication while using it.

>

> Elliot

>

>

[Guest guest]

Hi Elliott,

It's ok, I can always use a good laugh! I just thought you knew so much

about prairie dogs.

As for the black salve, I'm hoping I won't need to use that. I looked at

some of the pictures last night.

I did start on the FO and CC last evening. I didn't look to see if I should

have it for the evening meal or not I just fixed the 6 CC and 3 FO I had the

2 T. of FS. I will start this day with whatever I'm supposed to do.

I didn't like the looks nor the smell of it but it didn't taste too bad. It

doesn't matter what it all looks or tastes like as long as it works.

I love the support that I get here. I don't know if any of you have

experienced the same thing that I am or not. It seems that the family has pushed

away

from me, my husband and children don't mention anything about my health. I

have one son in law who always ask me how I'm feeling if I'm still drinking

juices or just what it is that I'm doing now. They don't call or visit like they

used to. Maybe this is their way of dealing with the situation, I'm not

sure.

Barbara